Musings by OZ

Christmas Eve 2015 I received a gift, a gift that I was not expecting, a gift that I didn’t want, a gift that changed my life forever. 

This was a gift that no one would ever want to be the recipient of, a gift that simultaneously filled me with dread and fear as well as strength and hope. This was one gift that no one would ever wish for, there was no return policy for this gift, once delivered it could never be returned. This was not a gift that I could hold in my hands, nor was it a gift that is wrapped in paper and bows, it was the gift of knowledge, the gift of life wrapped in a cancerous bow. Had this gift of knowledge not been bestowed upon me I would most likely have been dead within a year.

The gift was knowledge and that knowledge was CANCER.

Initially this gift, the knowledge that I was very sick and had a potentially terminal disease filled me with dread and fear of death but once I wrapped my mind around what I had just been told, once I understood that I had a disease that could take my life, I chose to not look at it as a death sentence. I decided to look at it as a challenge, a challenge to prove my strength, a challenge to live, the most important challenge of my life, this was not a death sentence but a life sentence!

 Since my diagnosis I have been asked many times what my symptoms were. Honestly nothing really stood out to me that said oh shit you have cancer. I have had various health issues for most of my life and was used to not feeling 100%. I always had some kind of minor complain but never for a second did I consider that I had cancer.  Most of the symptoms that sent me to the doctor two weeks prior to Christmas I had been dealing with for a many years.

We had just moved back to Los Angeles California after living in Santa Fe New Mexico for ten years. In Santa Fe I had visited a doctor to complain of a number of what I considered to be trivial issues, in retrospect these trivial issues were all symptoms of Lymphoma but my doctor in Santa Fe never once mentioned any possibility that I had any serious issues. 

A few of the projects that I built while in Santa Fe New Mexico

Close up shot of Sofa Table.

Primo’s Cigar Club in Santa Fe NM

Custom Bar made from recovered barn wood.

Residential bathroom

African Zebrawood Table.

Custom Buffet cabinet with distressed finish.

Custom Office made of solid Mahogany.

In Santa Fe I owned a custom cabinet and furniture business which kept me very busy. I could easily work 10 to 12 hours a day 6 days a week and not feel tired. A few years before my move to California I started getting tired, I just didn’t have the energy that I once had. I started getting up later and coming home earlier, I never considered that I was sick I just assumed that 20 plus years of working my ass off was finally catching up to me.  Another symptom were my hands, I was 45 when I was diagnosed and had been a cabinet maker since I was 18. After 27 years of working with my hands they were bound to be worse for the wear. My hands would swell up and I always had open cracks and cuts on my fingers and palms. They were often very painful but I never considered this a symptom of anything other than hard work. Another issue that didn’t concern me much was night sweats. I would often wake up in the night and my pillow would be soaked with sweat. My body has always run hot, when everyone else was cold I was always comfortable, I would wear shorts pretty much all of the time no matter what the weather. I was used to running hot so I thought that the night sweats were nothing to be concerned about.  I was wrong, night sweats are a classic symptom of lymphoma. Something else that I was not aware was a symptom was my lack of appetite.  Apparently  I had so many swollen lymph nodes in my abdomen and stomach that I just didn’t have much room left for food. I also had a persistent cough, I was never too concerned by the cough much either. I always thought that it was allergies but I now know that it was a symptom of lymphoma.

Prior to diagnosis I had a scan of my lungs, this scan showed that I had fluid in my lungs, this is called pleural effusion, a buildup of extra fluid in the space between the lungs and the chest wall. This area is called the pleural space and apparently 50% of people with cancer develop a pleural effusion. When cancer grows in the pleural space, it causes a malignant pleural effusion. This is a sign that the cancer has spread, or metastasized, to other areas of the body. Although a malignant pleural effusion is treatable, it can be a serious and a potentially life-threatening condition. Apparently my annoying cough was not just allergies. I also had aches and pains, my knees hurt, my back was sore and my hips were also very sore, I assumed I was just getting old but in fact all of these pains were symptoms of Lymphoma. 

  I addressed all of these symptoms with my family doctor in Santa Fe, lack of energy, feeling lethargic, swelling and cracking hands, aches and pains, nights sweats, lack of appetite and a persistent cough. These symptoms by themselves would not have been all that concerning but when you put them all together the word cancer should have entered the conversation, it never did. I had a number of doctor appointments in the last few years that we lived in Santa Fe and I addressed all of my health concerns and not once did the word cancer enter the conversation. The doctor addressed each concern individually and never thought to look at the big picture.

One of the final symptoms that sent me to my doctor in Santa Fe that should have immediately aroused suspicion and raised red flags but didn’t was a lump on the side of my neck. I had noticed a lump on the side of my neck a couple of years before and I had a doctor look at it. It wasn’t very big, didn’t grow very fast and wasn’t painful. In the past I have had a couple of sebaceous cysts removed so I thought that this was just another cyst. When I saw the doctor for the lump he looked at it and confirmed that it was just a cyst and nothing to worry about, no tests or biopsies, just a visual exam. If I knew then what I know now I would have insisted on blood work and a CT scan. Had these tests been done I would have been diagnosed with lymphoma and most likely at that point it would have been  stage 1 or 2 but the doctor was not at all concerned so neither was I.

For the last couple of years that we lived in Santa FE my wife often shared her concerns about my health but I ignored her concerns. It was easier for her to see my health decline than it was for me, all I knew was that I was feeling a little tired and lacked a bit of energy and that I had a bunch of random minor issues. What my wife saw was a different story. I never noticed exactly how much my health was deteriorating, I figured that my energy level was 10% less than normal but looking back I now realize that I was 50-60% the man I once was. 

A couple of photos of our magical home we once owned in Nambe New Mexico.

We lived in Santa Fe New Mexico for a decade, about 5 years after we moved there I started suffering from depression. We had a friend that not only helped me get through my years of depression but he taught me skills that would help me deal with life as a cancer patient.  Ralph’s business, Life Transition Therapy inc. is a Trauma Healing Center as well as a meditation center. Ralph has practiced Theravadin Buddhist meditation for over three decades and teaches meditation skills to others. Ginny knew that I was going through something and suggested that I meet with Ralph and see if he can help me. For many months I was opposed to getting this type of help, I didn’t believe in meditation and had no interest in spending my time learning how to breath. I finally decided to give it a try, it didn’t take me long before I realized that there may be something to meditation, it was actually a very powerful and life changing skill to learn.  Ralph taught me a whole new world, the world of meditation and conscious breathing. I went from being a naysayer to being a believer. I spent many hours with Ralph learning how to use breathing meditation as a tool to help me deal with my depression. 

Looking back on those days I now understand that my depression may have been a symptom of cancer. Research shows that cancer cells in our bodies trigger changes in our brains and these changes can result in hormone swings as well as depression.  The skills that I learned from Ralph helped me deal with the hormone swings and depression that is usually associated with cancer patients and the treatments that they receive. In my worse days of treatment I always found that meditation helped me tremendously when I was in a funk.

 In retrospect I tend to think that I got screwed by the health care system in Santa Fe. I had some pre existing conditions when I applied for health insurance when we first moved to New Mexico and because of the pre-existing conditions I was turned down for insurance. Because I was denied insurance I was allowed to apply for insurance through the New Mexico Insurance Pool. New Mexico had a system in place for those that couldn’t get insurance due to pre existing conditions or those that couldn’t afford insurance. Insurance was considerably less expensive if you qualified for the NM Insurance Pool, both Ginny and I qualified so we got insurance though this state system. Our insurance was through one of the major insurance companies and at the time I felt like we had good care and coverage but I now wonder if my symptoms were purposely overlooked because of what it would have cost the insurance company and the state if I was diagnosed in Santa Fe. Based on the symptoms that I had the doctor should have had enough suspicions to follow up on my complaints with blood work or various scans and tests. Was this incompetence or a systemic breakdown of the health care system? Something else that I find strange is my health record from Santa Fe. I have looked through my records from that time and I noticed that most of the things that I complained about never showed up in my Doctors notes. I find it slightly disturbing that most of the symptoms of Lymphoma that I complained about to my doctor never made it into my medical record, however there was mention of lymph nodes appearing normal on a few occasions. Once again I wonder if this is incompetence, a lack of listening skills or just plain stupidity.

On December 12, 2015  at my first appointment with the doctor in California I showed her the lump on my neck.  I also had a lump the size of a golfball under my left arm,  after showing her both of these lumps she was immediately suspicious and started ordering tests. Three days later I had a fine needle aspiration biopsy done on the lump in my neck, the day after that I had a thyroid scraping procedure and on 12/17/2015 I had a CT scan with contrast.  At this point the doctor was entertaining the possibility that I had thyroid cancer and this was causing my lymph nodes to be enlarged. On Christmas Eve day I had my first follow up appointment after the scan, thyroid scraping and fine needle aspiration biopsy and I was informed that the sample from the thyroid scraping was negative for cancer. I had just enough time to start breathing a sigh of relief when I was told that I actually had lymphoma but she was not sure what kind or how severe it was at this point. I went to this appointment by myself not really giving it much thought,  had I considered for even a moment that I may be diagnosed with cancer I would have brought Ginny with me for support but up until this day cancer was something that other people got, I never once considered that I may have cancer. Ginny called as I was on my way home to find out how things went, I was going to wait until I got home to tell her but it wasn’t difficult for her to tell that something was seriously wrong, I pulled over to the side of the road an broke down crying and told her that I had just been diagnosed with Lymphoma. This was the first of a many phone calls that I had to make that were the most difficult calls of my life, it is heart breaking to have to make these calls, as silly as it sounds it almost feels like you are letting your family down, it is not a rational way of thinking but that is what it felt like to me.

That was the last appointment that I went to by myself, from that moment on Ginny was right by my side as we started this journey into the world of a cancer patient.

  Waiting, waiting, waiting, there is so much waiting involved with cancer, waiting for appointments, waiting for test results and waiting for treatments. We had to wait a week to get any more info, a week of wondering and waiting, a week of considering the worse but hoping for the best. I knew I had Lymphoma but that was all the info I had, I didn’t know what kind of Lymphoma it was or how bad it was or what kind of treatments I should expect. I didn’t know anything except that I had cancer. So of course the first thing I did was to go home and Google Lymphoma, not the best move, there is so much info on cancer online and none of it is good. It’s not the best idea to start searching for info about a disease if you don’t really know exactly what it is that you have.

In the following week before the new year I had other tests including a bone marrow test. Picture lying on your stomach as a doctor bears down with all his weight on a hand drilling tool thingy as he slowly drills into your hip bone in order to remove a core sample of your marrow. It was kind of like screwing a corkscrew into a cork and then pulling hard to remove the cork, the local anesthetic numbed the area but you can feel and hear exactly what is going on and it was a bit uncomfortable to say the least.  After the bone marrow test I had multiple scans and more blood work, all these tests were done in order to help determine the stage of the cancer.

The afternoon of December 31, 2015, New Years Eve,  I had outpatient surgery to remove a lymph node in my neck.  After the surgery on the final day of 2015 I was told that I had stage four non-Hodgkin’s B Cell lymphoma throughout my entire lymphatic system as well as my bone marrow. I was informed that even though it was a slow moving cancer it had been in my body for so many years that it was now extremely aggressive and it required treatment ASAP.

December 12th was my first appointment in Los Angeles and less than 20 days later I was a cancer patient.

The same symptoms were complained about to my doctor in Santa Fe and were ignored for years, its just not right that the same symptoms led to two completely different diagnosis. We had been in Santa Fe for ten years and had two great businesses that we owned, we were quite comfortable living there yet for some reason we both reached a point where we felt that we had to leave, I can’t explain why but we felt an urgency to pack everything up, close down our businesses and start all over again in California. Looking back at it now I almost feel that my subconscious knew that my life depended on that move and when it comes down to it there is a lot of truth in that statement because had I not moved I would have stayed with the same insurance company and the same doctor and that doctor would have continued to ignore my symptoms.

I am convinced that had we remained in Santa Fe I would have been dead within a year.

New Years Eve 2015 , the day I found out I was a stage 4 cancer patient, I chose to fight, I chose to do everything I could to live and more importantly I chose to enjoy life, to enjoy life with my family, my friends and my wife the love of my life Ginny. I chose to enjoy each and every day we had on this planet and that night, hours after surgery with a bandaged neck and a groggy head, I chose to party!